It can be difficult to know what to expect as people with acute myeloid leukemia (AML) near the end of their lives. However, there are various ways doctors can make sure a person’s death is as peaceful and comfortable as possible.

The signs of death approaching may be different in every person, and there is no clear pattern. Regardless of symptoms or situation, healthcare professionals will ensure the person has the best end-of-life care.

In this article, we discuss the signs and symptoms of end stage AML. We also look at how to support patients and their caregivers and relatives through the final stages of AML.

A person who may have end-stage AML reaching out behind them.Share on Pinterest
Yakov Knyazev/Stocksy

Every person will experience end stage AML differently. The symptoms can vary based on their overall health, age, the extent of the disease, and whether they have any other conditions.

Doctors often observe the following signs and symptoms in people with end stage AML:

Energy and motivation

Symptoms relating to energy and motivation may include:

  • profound weakness and exhaustion
  • resting or sleeping most of the time
  • loss of interest in events and things previously held as important

Muscles and movement

Symptoms that affect a person’s muscles include:

Food intake and metabolism

Food intake and metabolism symptoms may include:

  • weight loss
  • little to no appetite
  • altered sense of taste
  • feeling full quickly
  • difficulty eating, drinking, or taking medication

Consciousness

Consciousness-related symptoms may include:

  • an inability to focus
  • poor and short attention
  • difficulty waking from sleep
  • hallucinations or delusions
  • less responsive to touch, sound, or other stimuli

Circulation

Circulation signs and symptoms may include:

  • blood pressure dropping
  • irregular pulse
  • a heartbeat that is difficult to hear

Secretions

Symptoms relating to secretions may include:

  • thickened mucus
  • dry mouth
  • a rattling sound when breathing

Breathing

Breathing symptoms may include:

  • neck muscles appearing tight due to difficulty breathing
  • changes in breathing rate
  • slow breathing with pauses or interruptions

Other symptoms

In the last days of their loved one’s lives, caregivers may notice an increase in symptoms, such as:

  • slowed breathing, with increasing intervals between breaths
  • dry mouth and lips
  • rattling or gurgling breathing
  • dark, bluish, or pale skin
  • skin and body may be cool to touch
  • loss of bladder and bowel control
  • little urine output
  • restlessness
  • anxiety
  • sudden, involuntary, and repetitive jerking of the body, arms, legs, or face
  • confusion about people, time, or place
  • hearing and seeing things that are not present
  • dream-like experiences

One 2015 study found that pain is the symptom people most commonly report during end-stage AML. People with AML may experience bone pain in the arms, hips, ribs, and breastbone as cancer cells overcrowd the bone marrow. People report experiencing either a sharp pain or constant dull ache.

Pain associated with blood cancers such as AML can be due to the disease itself, disease complications, or treatments.

However, doctors can provide highly effective pain management treatment, both during the course of treatment and toward the end of life. This ensures pain is well-controlled and that people have a peaceful death.

A pain control specialist can carefully plan an effective pain relief strategy with the person, their oncologist, the hospice team, and caregivers.

When treatment stops being effective or people choose to discontinue treatment, doctors may offer individuals end-of-life care.

End-of-life care aims to support the individual and their families and enhance their quality of life as much as possible, including providing comfort and managing pain.

Support involves asking individuals how they want to be cared for and offering support to their family and caregivers. Individuals or their caregivers can choose where end-of-life care takes place and where they want to die. They can choose to stay at home or go to a hospice, nursing home, or the hospital.

The ultimate goal in end-stage care is to make people as comfortable as possible. The following may help provide comfort:

  • ensure cushions and chairs are comfortable
  • observe proper turning schedules to prevent bedsores
  • serve small frequent meals
  • elevate the person’s position slightly to help with breathing
  • use blankets to provide warmth
  • offer ice chips if the individual feels they have a dry mouth
  • put a damp cloth over closed eyes to ease dryness
  • gently hold or rub the person’s hands and feet
  • apply lip balm or glycerin swabs on dry lips and mouth
  • offer massages if the person finds them comforting
  • gently apply alcohol-free lotion on dry skin

Asking a person about their end-of-life wishes and requests will help them feel they have respect and value. This includes following through with the manner of treatment they prefer.

For family and relatives who want to offer their support, just being present is enough. They can help reduce the feelings of uncertainty, anxiety, and loneliness by:

  • holding hands
  • sitting beside them
  • talking to them
  • listening to their stories

Family and relatives can inform the person about the day, time, event, situation, and the people with them to help ease confusion.

Meeting a person’s spiritual needs is also helpful, including resolving past conflicts with family and friends. Some people also find courage and peace through their faith, and reading texts and playing religious music may help bring comfort to the individual.

Remembering happy memories and sharing how the person has impacted people’s lives may also fulfill their spiritual needs, including living a purposeful life.

Many caregivers need help but seldom ask for it. People can offer support by offering caregivers a break by taking over small tasks or encouraging them to delegate tasks to other family members.

People can also remind and encourage caregivers to take care of themselves. While they want to focus solely on their loved one’s end-of-life care, reminding them to relax, rest, and not neglect their personal lives may help recharge them to be better caregivers.

Educating caregivers and relatives about what changes to expect and what they can do may prevent overwhelm and burnout. One 2017 study found that caregivers wanted resources for palliative care, coupled with education. They also appreciated direct language and for doctors to clearly state when death is close.

Another 2017 study notes that caregivers wanted support for three key things: decision making, information about dying and death, and emotional distress. However, the participants felt that the timing of information, and how hospitals structure care around the individual and not the family, were barriers to getting adequate support.

Caregivers can ask healthcare teams or cancer centers to connect them with a social worker, who will know about available respite resources available nearby. The American Cancer Society also has a caregiver resource guide.

During end-stage AML, the focus shifts from treatment to providing comfort and maintaining quality of life. Individuals at this stage present with several symptoms that indicate that death could be imminent.

Being aware of these symptoms can help caregivers offer the best care for the person. During end-stage AML is also a time to provide support and assistance to the family and caregivers of the person nearing the end of their life.